Thursday, February 21, 2013

Put me in coach, I'm ready to play!

Today Max had a doctor's appointment and I could not believe my ears when I heard he weighed 5 lbs, 5.5 oz and had grown to 19 inches long! Our little guy is getting to be a normal size newborn. Tomorrow is officially Max's ONE month birthday and I am so glad that he broke the 5 lb mark. He is doing really great with the exception of some gook in his eyes that has to be medicated and thrush in his mouth. Really small potatoes compared to what some parents deal with in a 7 week early child.

I have posted one of Max's photos from the hospital on this blog so that you all can see how precious he is! I love this photo and can't contain my oohs and ahhs when I see it. He really is such a beautiful boy. We continually realize just how lucky we are. Max has been doing so well and has started to really get down to business in eating. He eats 2-3 oz of either breast milk or formula every 3 hours so he is zipping right up the weight charts. Unfortunately, I have had to supplement his breast milk with formula for the time being due to his time in the NICU creating a deficit in me in providing for Max's daily food. I am able to produce about 2-3 bottles for him a day and the rest has to be formula. I am praising God for that amount that I can give him though so that he gets the most health benefits possible.

We received the big fat NICU bill today and all I can say is Thank you God, Thank you Anthem Blue Cross, and Thank you Starbucks. If not, we would be filing bankruptcy due to the bills accrued during this visit as well as my C-section and hospital stay. I am astounded at how amazingly God provided for this beautiful guy we now have and for us as we battled through the NICU journey. He is still providing as we see deficit from being on no income for almost a month.

God is so incredibly good. Thank you for stopping in to check on our dude. Those are our updates for now. Tomorrow I will be posting Max's letter of the month and another one of his pictures and a picture of Max at the 1 month mark! YAY! We have made it ...with your prayers!

Thank you again

Anthony, Erica & Maxwell

Monday, February 18, 2013

Home Sweet Home and lessons learned

Well, here we are looking at Max being 4 weeks old tomorrow and this is what I have learned about being a parent of a preemie. It's hard work!!! Being a parent period is hard work but this journey of having someone so tiny to worry about it is something I could have never imagined. I have always looked up to people who are great parents and thought it would not be something I would be good at. I'm not sure my feelings have changed much with having my sweet boy home for a whole week.

Anthony is back to work and I have Max by myself from about 1 in the afternoon until Anthony gets home around 11 at night. It's not so bad to be alone with him and doing the parenting tasks as much as I miss the adult contact giving me moral support in what I am doing. Luckily I have great friends who continue to text and make sure I am surviving new motherhood. Anthony also calls about 3 times per night just to make sure we are okay.

The hardest part I have learned is taking care of myself while taking care of Max. I have always heard this from multiple moms but with Type I diabetes, it's not as if I can just stop caring for myself. If I stop caring for me, I stop caring for Max. I find it hard to remember my meds, blood tests, and to eat enough meals and snacks. Between diapers, his feedings, and trying to get my life back together after 3 weeks away...I run out of time and energy. This all was to be expected and not one part of me is complaining...I love being a mom. Max is wonderful and I am so grateful for his life!

In saying that, I thought I would write a few little learning nuggets from our first real week at home. Enjoy

Being a mom means....

-- Two hours of sleep is like getting a full nights sleep. It's awesome!

-- Poop looks way different coming out into your hand than it does in the diaper. I am thankful for when it's already arrived in the diaper

-- The guilt that arrives once you are a mom is painful. Guilt about going to sleep, guilt about putting him down to do dishes, guilt for running to wal-mart, etc...GUILT GUILT GUILT

-- Doing the right thing for your child will make others mad. That used to be able to bother me but since it's about Max...I DO NOT CARE AND I LIKE IT!

Thank you all for stopping in and hoping to receive his photos in a few days from the hospital. I can't wait to share him with you all.

Love,

Anthony, Erica, & Maxwell

Thursday, February 14, 2013

Three weeks old and HOME

I was hoping to update the blog a bit earlier than this but unfortunately due to our very expensive three weeks of no income, we shut the internet off at our apartment to save on luxuries for a bit. Today, I had to run to the library to print a document so now was a good time to update you all on Max's progress. Max reached his goal of 100% of his feeds by mouth on February 8th and we thought we would be headed home immediately but the doctor's wanted to see a bit more weight gain so the next few days were spent awaiting just 10 grams of weight gain.

On February 10th, Max gained 40 grams and we were headed home. We have been enjoying have Maxwell home so much since we brought him home. He is doing great and has had his first pedetrician appointment where we learned he was 4 lbs, 12 oz which means since leaving the NICU, he has gained almost 2 oz. We are getting into a schedule and learning new things about being parents. The big test starts tomorrow as Anthony returns to work and I go at this thing alone. Say your prayers for me.

I wanted to also report that God so completely provided for our time in Louisville and we were able to have our entire time there in lodging, food, and gasoline provided by YOU...our friends and family. We feel so incredibly blessed to have you all in our lives and Max is lucky to have you all as well. We will continue to tell him the story of how God richly provided and he is so loved. Keep Max in your prayers as he climbs the weight charts and grows into a healthy FULL TERM newborn. Right now, he would only be 35 weeks gestational age so we want to keep him in prayer for development and health.

We love you all and thank God for you daily.

Anthony, Erica, & Maxwell

Tuesday, February 5, 2013

Two weeks old and more updates

Today Max turned 2 weeks old. I can't believe this baby that I have waited for, for what seems like forever is already here and turning two weeks old. I am sure that it feels a bit unrealistic since I have never been able to introduce him to friends and family or even been able to put him to bed in his own house. Yes, it is getting to me. This past week has been grueling for Anthony and I emotionally. We feel horrible for even complaining as Max is making so much progress and is growing and progressing through his NICU steps like a champ.

The doctors say that the only thing Max has left to do is to take 100% of his feeds by mouth and maintain that for two days and we will begin the discharge process. He has been taking anywhere from 60% to 90% over the last couple days but he hasn't quite hit 100% yet. He does really well at feeding but unfortunately because he is early, he gets tired when he eats and denies the bottle sometimes and they have to push the breastmilk through his NG tube in his nose and that does not count as 100% feeds. It has been very difficult to be teetering on the edge of taking our sweet boy home and just not quite getting there.

There are the obvious other things too like staying in hotels, not sleeping in our own bed, not making any money and worrying about how we are going to pay bills, and having various things at home that we can't really attend to right now. God has been so faithful to help us have places to stay these last two weeks, enough to eat, and gasoline to get back and forth to the hospital so you know...again...it feels horrible to grumble. We have experienced so much kindness by our friends who have stepped out and given us money to eat, have gasoline, etc.... We know that God has provided this far, so He will continue to.

We don't really have any idea how long it is going to be until we get home. The doctors say at the rate Max is going, it will be at least another week. They also say it is entirely normal for babies at this stage of development to take several steps forward and a few steps back making the stay longer. That is disheartening but we have had to take that news in stride and be patient with Max's progress. We love him enough to know that it is best for him to be here as long as he needs to be but we are also humans who are tired, concerned, and overwhelmed with what new parenting has brought us.

The current statistics on Max is that he is weighing in at 4 lbs and 11 oz. He went up briefly to 4 lbs, 13 oz but lost a bit when backing off on his feeds. He has not been measured again since birth to my knowledge but I will update when I hear something on that. He is off the Bilirubin light and is completely out of the jaundice area. He is no longer taking anything through an IV and has only the NG tube hooked up to his body as well as the machines that monitor his respiration and heart rate which are always great. My boy is super healthy and I praise God daily for that!

 Although all those things are true, unfortunately, it is incredibly hard on one's spirit to hear good news only to hear it is prolonged another week. Anthony and I have stayed strong through this by letting each other have weak days and strong days. Today, I felt a bit stronger and Anthony said when he got up this morning that he was on the "edge of tears" so to be aware. I know that if I was not doing this journey with my best friend in the world and a man I trust implicitly, I would be totally lost. We would really like to extend our needs to you friends and ask you to pray, help, support us, encourage us in whatever way you can!

Here are the current prayer requests:

1. That Max reach his 100% feeds by mouth and be able to maintain that for 2 full days in order to start the discharge process and that nothing else comes up. That he is FULLY able to go home as soon as possible and that he is READY by doctor's standards

2. That we are able to afford the stay out here for however long he does have to stay. We are paid through February 8th and then it us up in the air and we go back to not having a place/money to stay.

3. That we are able to eat semi-healthfully while we are here since I am breastfeeding and diabetic. We have so far had enough help that we have been able to do this.

4, That we have enough gasoline to get to and from the hospital as well as be able to go home here and there to get things we may need (more clothes, mail, etc...)

5. That we are able to pay our February bills since Anthony has not worked since January 18th when I was admitted to the hospital. He had a few vacation days but then had to go on FMLA leave for taking care of a family member and has been here with me and Max. This was obviously necessary as I had surgery and can not drive/lift and staying here seemed like the only feasible option we could stomach.

6. For our weary spirits and achy hearts as we have to say goodnight to our boy each night and sleep in a different location from him. That our journey as parents hasn't really begun or at least it doesn't feel like it. That we are feeling beaten down, tired, and overwhelmed and need a refreshing of our spirits from the Lord.

I also wanted to update you all on our little friend Bennett who we asked you to pray for in the NICU. The hole in his heart has closed up, he is off the vent and is making amazing progress. Thank you to all who offered up prayers and please continue.

Again, thanks for stopping in, for your support and love as we journey through this and for even just thinking about us and asking how we are. We appreciate every prayer, word of encouragement, hand of help, and gesutre of friendship.

All of our love,

Anthony, Erica & Maxwell :)

Friday, February 1, 2013

Update from Louisville

So last I wrote about Max, he had just been cleared of having Hirschprung's disease in his Bowels. That was some of the best news we had received up until that point while being here. We have received much more good news since that post. The doctor's decided to begin feeding Maxwell more in order to check and see if his colon was working properly yet. It wasn't long before he had his first (non forced) bowel movement indicating that he, indeed, did have a working digestive tract. It is amazing the things that you will celebrate as parents...poop is one of them!

A few days into him eating again we began to see weight gain. First, it was 20 grams here and 50 grams there but today after inching his feedings up and praying, Max is back up to 4 lbs, 8 oz. He is only one oz away from his original birth weight. Another thing that has improved is that his jaundice levels have been down enough for him to not be under the "tanning bed" style light but just a tube that goes underneath his blanket in the bed. When I last wrote, Maxwell was also in a warming bed as he could not maintain his temperature and had never worn clothes. As of today, he has been wearing clothes for three days and can maintain his temperature in an open crib all by himself! My boy is growing and progressing by leaps and bounds.

Since Max's digestive tract was the issue, we knew that we would be taking (no pun intended) baby steps toward him eating. I decided to breastfeed Maxwell and that means I have been pumping and stockpiling breast milk since he was born and they have given him minute amounts in order to get him up to speed. Today was a huge step in Max's health as well as our relationship. Max breastfed for the first time!!! He latched right on and ate for 20 minutes which is fantastic! We are so proud of our little guy and all of the progress he has made.

We are really excited to see all that God has done and we appreciate all of the prayers, concerns, and help we have gotten while we have been here. We are now staying at an extended stay hotel that our friends, Stephanie and Josh Hardy provided for us. They are friends we met at Maternal Fetal Medicine who are also undergoing their own battle with a preemie in the NICU. If you could extend your prayers to their little guy, Bennett, that would be great as he is going through a heart murmur, has endured several blood transfusions and seems to have a bumpy road ahead. They are from the area and felt that helping us out with lodging was on their heart. Such a lovely thing for them to do.

Thanks to the kindness of our friends/loved ones we have been getting by in food and gasoline and are working towards having enough money to cover our bills for while Anthony had to take FMLA leave from work. He has missed or will miss over 3 weeks of work that is unpaid. That has been a challenge for us to trust God and just be together but we both feel it is for the best as I am still in the recovery period for surgery and Max is still in the hospital.

Maxwell was moved again from the Kosair Neonatal Intensive Care Unit (of the highest degree) down to a more intermediate level which means he is on the path to discharge. We have spoken with the doctor on Max's case and she told us that she was not comfortable stating when he would be discharged but said it would be at least another week. We are hoping that it is exactly that...the least it can be. We are very homesick, exhausted, and ready to bring our little guy home to meet all of the wonderful family members and friends who have been there for him and us through this journey.

Speaking of the journey, it has been a rough one. It is incredibly hard to say goodnight to your child every night and walk out the door and sleep somewhere else. It is incredibly hard to ask another adult if it is OKAY for you to hold or touch your baby. These things have been a challenge for Anthony and I and we fully believe without the grace of God and your prayers, we would be crazy these days. We are forever grateful to you all for your love and to God for his help and Max's quick progress and recovery. There have been so many parenting lessons and life lessons learned these last two weeks that we have no idea how to incorporate or write about what those are.

I think to make it very quick and concise we have learned

-- to love Max with a tenacity that only can happen day by day. To love your children with a daily love keeps you focused on the important things like praying for them, saying encouraging words, and giving them affection and attention that is unrestricted

-- Being kind to each other in marriage becomes far more important when there is a little one. Anthony and I have always made it a point to be kind and compassionate to each other but being each other's best friends this last two weeks has been paramount as he is the ONLY person who gets how I feel about Max.

-- Being able to do self-care was one of the most important skills I developed as a therapist. It has come in handy as my mind has been taxed, I have been in full anxiety mode and still have to feed myself properly, take care of my spirit, recover from surgery, and be married and breastfeed.

-- People really are pretty great and care about us! We have some of the best friends on the planet!

I hope you are all doing well and thank you for your continued support, love, and prayers

Anthony, Erica & Maxwell